The incredible journey of Thatcher Ulysses

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So I’ve been sitting here trying to figure out how to kick off Down Syndrome Awareness month. I intended to participate in 31for21, which is where you blog every day of October to promote Down Syndrome awareness, but I’m on night shifts and I totally let sleep take prescience last night instead of devoting my time to blogging. So here we are, kicking it off on October 2nd. Oops.

I sat here thinking and browsing other people’s blogs, trying to think of how to start. And then it hit me.

Yes, we need to promote awareness. But WHY? I mean, everyone I know has been really open and welcoming. Since I’ve gone back to work, everyone has been amazing and interested in how Thatcher is doing, and has told me how adorable he is (I agree!). It seems like, in my life, awareness and acceptance are already running rampant.

Except, it’s not like that everywhere. I still read articles on Huffpost or Upworthy about Down Syndrome, and underneath the heartwarming post, there are comments about how kids with Down Syndrome… kids like mine… should have been aborted. About how they are a burden on society. About how they shouldn’t be allowed to live normal lives, be included in “typical” classrooms, or have jobs. And I look at the abortion rate of babies with a prenatal diagnosis (something I plan to cover in a separate blog): 80%. EIGHTY PERCENT. Eight out of ten families who find out that their baby has Down Syndrome, abort them. Just because of one extra chromosome. So, clearly, awareness must be raised. Acceptance isn’t here yet. We are far from it.

But with this blog, I wanted to get into how far we have come, and how proud we should be of our forefathers, who raised amazing kids with DS despite adversity, and helped us to be where we are now. Without them, Thatcher wouldn’t have received the care he has. He wouldn’t have been set up with physiotherapy at two months old. We wouldn’t have our local Down Syndrome Association. Without them, nothing would have changed.

You might wonder what I’m talking about. Maybe some of you are old enough to remember those times. Maybe, like me, the only injustice you recall for kids with DS was that they were in the “special needs” class in school, where they were totally segregated and made to feel like outcasts by us, the “normal” kids. And yeah, that’s pretty bad. But it’s not nearly what I’m talking about. I’m talking 60, 70, 80 years ago. When people with Down Syndrome weren’t even treated as people.

I had a conversation a few weeks ago with a lady at work. The topic of DS has come up a lot at work, because people have a lot of questions about it (which is great, and I appreciate it! The more you know, the better!), and because we have a few patients right now with Down Syndrome. The conversation I had with this woman both sickened me and made me thrilled that we have come so far. She told me that her father, who must be in his 70’s or 80’s, had a soft spot for people with Down Syndrome. The reason being, every day when he walked to school he would see a little girl with DS sitting in her bedroom window. The girl’s siblings went to his school, but the girl never left the house. She had a room upstairs that she wasn’t allowed to leave; the parents would come in and feed her and change her, but that was it. And back in the day? That was NORMAL. Some people with kiddos with DS would ship them off at birth, pretend they never even knew they existed, pretend they died. It was shameful to have a kid with Down Syndrome. It wasn’t acceptable in society. One in 600 live births is a child with Down Syndrome. But somehow it was something to be ashamed of.

I feel for those parents. I wonder, if they are still alive, what they think of how things have changed. Are they glad to see that people like their daughter have normal lives, go to inclusive schools, graduate, go to college, get married? Do they feel sorrow for the life their kids could have had, if things were different? I imagine they must, although I know how hard it must have been for people to go against the grain and fight for education, fight for healthcare, fight for rights. It’s a fight that may not be as obvious today, but it’s still being fought. It’s being fought because of the abortion rate. It’s being fought because of the trolls on the internet who think that my child doesn’t deserve to be here, to have an education, to have a job, to have a normal life. And it’s a fight that I will continue to fight, not just this month, but every day, because I never want to be the parent that looks back in sixty years and thinks, “I should have done more.” My child will never be locked in a proverbial room. He will be running around that neighbourhood with his brothers and sisters, walking home with that neighbour boy, who will still, when he grows up, have a soft spot for people with Down Syndrome. But the soft spot will be because he knows and loves Thatcher, not because he never had the chance.

There are two sides to the “being a parent to a child with Down Syndrome” coin.
There’s the side wherein you don’t want people to view your child as “the kid with Down Syndrome,” “the Down Syndrome kid,” or, worst of all, “the Down’s baby.”
And then there’s the side where you want to shout it from the rooftops, to normalize Down Syndrome, to make people ‘see the ability’ and know that Down Syndrome is common, it’s out there, it’s not scary, and that our kids are capable of anything.
I toe this line, and which side I’m on depends on the day.
Today, I’m shouting it from the rooftops.
Today, I’m letting everyone know. Because of one word. The R-word.
Yup, the R-word AGAIN.

Now, I’ll be 100% honest. When I was a teenager, my aunt worked with people with disabilities. She would tell me time and time again not to use the R-word. And I didn’t listen. Yeah, I tried. But it wasn’t important to me. She just told me it was offensive to people with disabilities, and I didn’t really get why.

Well, that damn word came up again today, and it won’t go away, and I feel the need to explain again why it’s offensive.

So, here’s what happened. I was in a professional setting, where I was a client, and I was talking to the person working there. She was asking me about Thatcher. I said he was growing up way too fast, and her response was, “I know! It’s retarded how fast time flies!” I stopped her right there. I told her that yes, time flies, and that is many things, but it is certainly not retarded. I told her that the R-word is a word that we no longer use in our household, because of my son, who has a disability. Her answer? “Oh right, he’s Down Syndrome.”

Actually, he is NOT Down Syndrome. But yes, he has Down Syndrome. Two totally different things. Down Syndrome does not define him. It’s not who he is. It’s a part of him, yes. But he’s Thatcher, thank you very much.

Fast forward my story, I posted about this professional to a group on social media, and while most people were also appalled at what had happened, one person told me I was being a hypocrite for being offended and for educating this professional. About a month ago, I had referred to Michelle Duggar as an idiot. Yup, a celebrity who willingly puts her life in the spotlight is apparently not allowed to receive criticism on a public forum. A celebrity whose claim to fame is spitting out J-named offspring, and petitioning against the rights of transgendered people. Let’s see. I’m standing up for people with disabilities, but that’s hypocritical because I hate homophobic celebrities? I can 100% see the logic here, can’t you?

Anyway, this got me all riled up, and let to yet another Facebook broo-ha-ha. A lot of friends of mine stood up for me. There are probably some people out there that were pretty angry with me. A lot of stupid things were said from all sides of the argument. And the point? Totally lost.

So what was the point? Why was I so upset by this situation? Because even when the R-word isn’t used to describe Thatcher, it’s demeaning him. Let me explain:
The word “retarded,” at the very root of things, means “slow” and “delayed.” It’s a medical term, albeit an antiquated one. It was used to describe people who were developmentally delayed. So if you were to call Thatcher retarded, and you were a doctor, you would be from the middle ages, perhaps, but you wouldn’t be wrong.
Here’s where it goes wrong. Nowadays, we use the word “retarded” to describe things that are stupid, or ridiculous. So for example, the professional I saw today used it to describe how ridiculously fast time is moving.
So, what’s the problem with that? Simple. You’re taking a word that describes my son, and you’re making it a bad thing. You’re making it something stupid, something ridiculous, something crazy. You’re making the word mean something else, something bad. So now that word that describes my son, that word is a bad thing. By association, my son’s delays are now a bad thing.

Do you get it yet? If not, I’ll use another example. Take the word “gay.” It’s used to describe someone who is homosexual. There’s nothing wrong with that, right? But you take that word, and you use it to describe things that are lame. Maybe you are homophobic. Maybe you’re not. The misuse of the word “gay” certainly started out with homophobes and spread from there. So you take the word “gay” and you use it to describe things you think are lame, and things you don’t like. You don’t like that movie? “That movie was SO gay!” …. see what you just did? You just took the word “gay” and made it something bad. By association, if a person is gay, they are now bad, too. You don’t have to call a person “gay” to make it offensive, you just have to use the word in an offensive context to basically insult every homosexual person on earth.

The R-word is the same. You’re taking a word that describes my son, and you’re making it bad, making it wrong. It might have started out as a slur by people hating on people with special needs, but even if you know or love someone with special needs, your hateful use of the R-word is them. That’s why we need to Spread the Word to End the Word. We need to stop using this word, period. You’re never using it “in a non-offensive way.” It’s always being hurtful, whether it’s intentional or not. Maybe you think I’m a hypocrite. Maybe you don’t. I don’t care. I just care that you think about your words before you speak, and you think about what those words mean and who they might hurt, intentional or not. I’m doing my best to, as well.

And if I correct you, or point out your use of the R-word? I’m not trying to offend you. I don’t judge you. I know it just slips out, because it used to slip out of my mouth, too. I’m just telling you because the more we can spread the word and educate people on why the word hurts, the faster we can eradicate it. The faster we can eradicate antiquated ideas on what kids like mine are, what they can do, and what defines them. The faster we can make people realize what people like Thatcher can do, rather than focusing on what they can’t.

So today is World Down Syndrome Day, and I thought I’d do a little post on what Down Syndrome means to me. I know that the meaning has changed for me even in the past few months, and I think as Thatcher grows, the meaning will continue to evolve for me, but this is the meaning in the here and now.

First, I’ll start off with a brief introduction of what Down Syndrome is, in case you don’t know. I’m going to put it totally in layman’s terms here. Basically, when a baby is conceived, the egg and sperm meet, and each has twenty-three chromosomes. They come together to make a zygote that has 46 chromosomes. Occasionally, the chromosomes don’t divide properly and you end up with an egg or a sperm that has an extra copy of the 21st chromosome. When conception happens with one of these, the resulting zygote now has three copies of the 21st chromosome, for a total of 47 chromosomes instead of the typical 46. This little zygote has what you call trisomy 21 (three copies of 21), or Down Syndrome. There are other ways that Down Syndrome can happen, including a chunk of extra 21st chromosome stuck to mom’s or dad’s genetic makeup, but in Thatcher’s case, he has trisomy 21. A total fluke chromosome that changed our lives.

So, what does this mean? It means that the resulting baby with trisomy 21 has a higher chance of health issues like heart defects, sleep apnea, low muscle tone, umbilical hernia, leukaemia, thyroid issues, and intellectual disability. It means that because of their low muscle tone, they will probably take longer to reach milestones like sitting, crawling, and walking. It means that they might grow slower, gain weight at a less rapid pace, and be smaller as adults. It means that they generally will have a lower IQ than typical people. So basically, it means they have a lot of strikes against them.

I have met a lot of parents of children with Down Syndrome that will tell you how happy they are that their child was born with DS. They say they can’t imagine having a child without it. They are glad their child has an extra chromosome. I can’t say that I will go that far. I love Thatcher exactly how he is, but if I could take away that extra chromosome and still have exactly the same funny, handsome, smart boy that I know and love, I absolutely would. I would love to take away the heart defect he was born with, the sleep apnea that I am pretty sure he has, or the probability that he will need extra help in school. I’d love to not have to worry about seeing our occupational therapist every few weeks (although we love her!), or having bloodwork done to check Thatcher’s white cells and thyroid function. I’d love to never have him do a sleep study, to not have to have his eyes checked so often, to never go back to the cardiologist. So, if I could keep him just as he is, but not worry about all those things, then I absolutely would.

But, in a way, I am thankful for Thatcher’s extra chromosome. It might mean more therapies and doctor’s appointments and challenges, but it brings with it some wonderful things.

First and foremost, Thatcher is Thatcher. And Thatcher has 47 chromosomes, three of them being the 21st. He is exactly who he is, and who he is supposed to be. Again, I don’t buy into all that God stuff, but I think we are here for a reason and I think that Thatcher is Thatcher for a reason. Yes, I would love to take away all the things that come with his extra chromosomes, all the worries and fears and scary things that come with it. But I would never change him. He is who he is. He is not just Down Syndrome, but he IS a child who has Down Syndrome. And I wouldn’t change him for the world. He is the brightest, funniest boy who makes my world turn. He is my reason for getting up in the morning (or at the butt crack of dawn!), he is in every smile. He is my whole world, exactly how he is. He is what I am most thankful for.

Next, I am glad for the Down Syndrome community. I have met so many wonderful people, through our local Down Syndrome association and through online support groups. We also had the wonderful experience of meeting Tara and Pip from Happy Soul Project. I think she said it best in one of her older blog posts, being a parent of a child with Down Syndrome is sort of like being in a special sorority. It’s a family of people who support each other and accept each other. It’s really quite phenomenal how open and welcoming I have found people to be, how they share in your ups and downs; despite never having met you, they help you celebrate your child’s accomplishments and support you on your darkest days. I couldn’t be more thankful for these wonderful parents (and sometimes grandparents/siblings/etc) who have been such a phenomenal support.

I’m also thankful for the strength that Thatcher has brought out in me. In college, I used to make my mum call the phone company or the car dealership or whatever it was, to make a complaint for me. Thatcher has brought out my inner mama bear. By advocating for him, I am learning to advocate for myself. He has also taught me to be strong in other ways. I used to be a quitter. Seriously. I didn’t follow through on a lot. But this whole parenting thing is teaching me to stick with things. It’s teaching me that sometimes, the best things take work (like sleep training! Good lord!). I think this is definitely applicable in other aspects of my life, and I’m hoping it’s going to help me with Weight Watchers : p

Another thing to be thankful for is how Thatcher has changed my perspective on people with disabilities. One of the mottos of the Canadian Down Syndrome Society is “See The Ability.” I think that before Thatcher was born, I didn’t realize the amazing things that people with disabilities, and especially people with Down Syndrome, could do. When he was born, I only saw the negatives, the tests and doctors and special help he would need. But people with Down Syndrome do amazing things! They go to university, they have jobs, they get married. They do all the things we would hope for our children. I actually read today about a young man with Down Syndrome who is a student at the University of Alberta and a member of Lambda Chi Alpha, my husband’s fraternity. I thought, “Uh oh! We are going to have a frat boy on our hands in 18 years!” We are going to have a frat boy. A university graduate. A young man who has hopes and dreams, and reaches them. And if you still don’t see it, keep following us. I have no doubt that Thatcher is going to blow any preconceived notions of what a “disability” is out of the water.

So, today, on World Down Syndrome Day, I am thankful. I am thankful for all the lessons that Thatcher has taught me, and all the lessons I have yet to learn. I couldn’t ask for a more perfect reason to celebrate today ❤